Please tell me about your headaches and migraines following viral meningitis. On the hunt for better pain relief! 🧠🤯

[poppet777]

I was hospitalised with viral meningitis in October 2017. At the beginning I was often fatigued but my main problem since October has been my daily headaches. I have tried multiple medications and treatments, both conventional and complementary. I have been on Amitriptyline, Gabapentin and had two occipital nerve blocks. These were all unsuccessful. I am now taking Candesartan which does offer some relief but the dose keeps needing to be increased to achieve the same effect. I have had a course of acupuncture, cranial osteopathy, take migraine prevention vitamins and have tried cbd oil. My observations; pulse and blood pressure are high on standing and so I have been tested for POTS. The doctors are still unsure whether there is a cardiovascular element to my headaches even though POTS has been ruled out. (POTS - your pulse rises to a high level on standing). I haven’t been able to work since my illness. I am unable to achieve good pain control and pain killers are ineffective. I wanted to ask other headache suffers about the nature of their headaches. Mine are very positional, I always wake with a very low pressure feeling in my head, I wouldn’t say this sensation is painful. On waking and moving about the pain will get steadily worse throughout the day. The pain gets worse on standing and subsides with lying. It’s worse when I bend over, it’s never pulsating and is mostly frontal. I will develop pins and needles on my face the more upright I am and am often nauseous on standing. At the moment my neurologist is trying to work out whether I have a low pressure headache from the initial lumber puncture.

How would you describe your headaches/migraines after viral meningitis?

Are they positional?

Follow a daily pattern?

Anyone found a miracle cure?!

Do they come and go, triggered by things?

I’m desperate to return to work and regain a bit of who I was before this happened.

Thank you in advance!

[Starry]

Big hugs, I just tend to get episodes of dizziness, with a sense of pressure around the back of my skull. But when it happens I also get exhaustion and cant even think have to just lie down.

FWIW I rate using turmeric with black pepper and fresh ginger in my diety as anti inflammatories as helping. Stress massive aggravator. Found pregabalin in higher doses trigged headaches though it helped in low doses wtih sleep and anxiety. But we are all different....

[poppet777 in reply to Starry]

Many thanks for your reply. Will give the dietary additions a try. Always good to try something new with no side effects! Good luck with everything.

[Starry in reply to poppet777]

Thanks. Good luck with aiming for the return to work. My advice is wait as long as your sanity will let you and the do a phased return witu a very slow build. I crashed out in my first attempt and am only up to 4 hrs 4 days on my second aiming for 6 by late November.

[poppet777 in reply to Starry]

Yes my first return to work was a disaster but I did feel I was thrown into the deep end. Will aim for the slow build if work allows. Good luck with your increase in hours.

[Ga59]

It is many years since having had VM and like you have tried all sorts of pain relieve - natural and otherwise. I am finding right now, I have a constant dull ache in my head on the right side but as soon as I notice flashing, nausea and light sensitivity I talk a Rizamelt and go and lie down. Nothing touches the pain unless I end up in the ED and then they do intravenous morphine. In saying that I do have patches of time when I am basically free from head pain and the fatigue is not nearly as bad, life goes on and it never just one thing that will trigger a bad spell, more like a combination of stress, overtired and ingesting something that doesn't agree. We are so uniquely different that what suits one person may not suit another, so in saying that, I feel your pain and know exactly how you are feeling. It has taken me many knocks to stop and listen to what my body is trying to tell me - SLOW DOWN!!….I trust this is of a little use to the reader.

[poppet777 in reply to Ga59]

Thank you for your reply. I think only now I’m starting to work out the triggers and listen to my body. At the start I was always conscious to move everyday regardless of how I felt. I’m hoping to be able to return to some sort of normality, even if it means living with, rather than free from headaches. Good luck with everything.

[poppet777]

Thank you, will look into this.

[BabsK]

Hi. I had VM in May 2017 and was left with severe migraine and cluster headaches. My GP prescribed Sumatriptan which has really helped . I also now do gentle yoga and have found this has greatly helps any neck stiffness and feelings of pressure. I’m pretty much back to my usual self and the headaches are less frequent but took the best part of a year to feel “normal” again. I find if I take ibuprofen along with the Sumatriptan I get a quicker result. X

[poppet777 in reply to BabsK]

Really positive to hear that you feel normal again, that gives me a bit of hope! I’ve just been prescribed a triptan to try alongside other medications so will see what happens 🤞🏻. Did you ever have any success with caffeine? This has also been suggested.....

[BabsK in reply to poppet777]

I take a variety of Herbalife supplements including their energy green/black tea which has 85mg caffeine but only a couple of cups a day as I’m a bit caffeine sensitive. The main supplements I take are: Omega 3 fish oils and a multi vit including B Vits. I’ve used their products for years and they are great for energy.

[Lippistix]

Hello, You can find my 28 year old daughter, Rosie S' Story, via the link on the forum stories from the home page.

Poppet777, Its important you seek out the right physician for your cranial osteopathy....

We found that cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.

It is rare for a story to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie is pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.

We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.

If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.

Kind wishes and best of luck

[Portage]

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